Diagnosing Rare Diseases: A Project

[TruthSeeker]

The other day I was watching a show on TV about mysterious diseases. People told stories about how hard it is to get diagnosed. Here are my thoughts:

1) Regular doctors don't seem prepared to handle all possibilities. They seem to be stuck into the norm, so they always expect the norm. That seems to be a big part of the issue

2) Why not create a database of rare diseases? Most of those diseases are seem to be genetic, so that's a good place to start. Here's how it would work:
- patient enter symptoms in a form (one by one, selecting from a deined list which is logically organized) and answer several other related personal questions that could influence a disease (eg how much they weight, disorders in the family)
- encyclopedia then spits out a list of possible diseases, with their relative probabilities. You can then click on them and see a brief and then a detailed explanation of the diseases - what they do, how the symptoms feel, etc

That way people could bypass the doctors, which would accelerate the process. Of course, the database wouldn't give a definitive answer, but it would point to a name, which can then be tested and confirmed!

It shouldn't be hard to do. Just get a few specialists together and create it. There is probably an encyclopedia of such kind as a book already, so it shouldn't be hard.

I'm already working on it. Who's with me?

(Project needs a name. How about "Project Ductape"? )

 

[river-wind]

1) agreed. Doctors regularly give out anti-biotic for brown recluse spider bites, a treatment method which has no logic behind it at all. The bite injects is a necrotising venom, not bacteria.
MRSA is still diagnosed as a spider bite more often than not. And so, again, they give low-level anti-biotics. Way to make the problem worse, guys.


2) Web MD


I'm not knocking all doctors. There are way too many possible illnesses and/or disorders for a doctor to know them all. Most doctors are hard-working, selfless individuals who work crazy hours every day in order to help people. I applaud their drive and altruism.

However, when a logger comes in to the ER and says "A chainsaw cut my leg", the first reaction of a doctor should not be "That's clearly a dog bite!"

 

[TruthSeeker]

Yup!

Furthermore, doctors try to not give you a test until they have nearly 100% assurance that the test will return positive (they do that to save money, pressured by the government and BigPharma). Because of that, a lot of people end up dying because they get diagnosed too late. Happens all the time with cancer....

It's a very sad situation... :shrug:

 

[John99]

Yup!

Because of that, a lot of people end up dying because they get diagnosed too late. Happens all the time with cancer....

It's a very sad situation... :shrug:

So much for socialized medicine.

http://www.theadvocates.org/freeman/8903lemi.html

 

[river-wind]

Yup!

Furthermore, doctors try to not give you a test until they have nearly 100% assurance that the test will return positive (they do that to save money, pressured by the government and BigPharma). Because of that, a lot of people end up dying because they get diagnosed too late. Happens all the time with cancer....

It's a very sad situation... :shrug:

I've actually found the opposite to be true. so afraid of being sued for *not* finding something in time, doctors are performing more and more unneeded tests 'just in case'.

Where a thump on the knee with a rubber hammer once ruled, a $600,000 MRI now lives.

 

[TruthSeeker]

So much for socialized medicine.

http://www.theadvocates.org/freeman/8903lemi.html

Yours is no better. You have no money you are fucked! :bugeye:

 

[TruthSeeker]

I've actually found the opposite to be true. so afraid of being sued for *not* finding something in time, doctors are performing more and more unneeded tests 'just in case'.

Where a thump on the knee with a rubber hammer once ruled, a $600,000 MRI now lives.

You're lucky. I still don't know what the hell is wrong with me.

 

[river-wind]

meh. Neither do a large portion of my friends. They simply don't go to the doctor, because they can't afford it.

It seems that our nations have found the same problem by going too far off opposite deep-ends.

 

[TruthSeeker]

Yup

 

[Hercules Rockefeller]

Regular doctors don't seem prepared to handle all possibilities.

It is absurd to expect a GP to be able to handle “all possibilities”. In the 21st century it is just not possible to be knowledgeable in all areas and on all diseases. To be an expert in a particular disease(s) frequently requires dedicating a whole career of focused research. Such physicians, although extremely valuable, typically make for poor (generalist) family doctors.

Why not create a database of rare diseases?

Do you really think that there are no databases of rare diseases? Of course there are!!! Surely you don't believe that’s an original thought. :bugeye:

That way people could bypass the doctors, which would accelerate the process.

The only thing that would accelerate would be the incidences of misdiagnoses and time and money spent dealing with the misdiagnoses.

I'm already working on it.

....and all without any medical/scientific training. Amazing!

 

[Read-Only]

You're lucky. I still don't know what the hell is wrong with me.

I don't know where you live but River Wind is dead on the money for medical treatment in the U.S. Doctors freel pressured to GROSSLY over-test to avoid missing a test that might reveal the problem. And that, along with ballooning costs for malpractice insurance are THE primary reasons for our growing healthcare costs.

One big drawback to your idea is that self-diagnosis checklist. When people do something like that they will ALWAYS come up with symptioms they don't really don't have. For example, "do you have frequent headches?" Answer - yes. (While in fact thay may have had one only every two weeks on average and those were brought on by drinking or smoking.)

Thais like that REQUIRE an interactive session with a live doctor in order to rule out spurious incorrect information.

 

[TruthSeeker]

It is absurd to expect a GP to be able to handle “all possibilities”.

Of course. Why do you think I propose this thing?

Do you really think that there are no databases of rare diseases? Of course there are!!! Surely you don't believe that’s an original thought. :bugeye:

I wanna see them, then. Let's see! I wanna take a look and see if I can find what I have!!

The only thing that would accelerate would be the incidences of misdiagnoses and time and money spent dealing with the misdiagnoses.

Ha! Not really! How many times have I being misdiagnosed by doctors? Like... about 20 times AT LEAST! Those people on the show were misdiagnosed for years! This project would do the exact opposite. It would take all the information and search for matches.

....and all without any medical/scientific training. Amazing!

You must be retarded or something. :bugeye:

The point is to get doctors to work on it, people would use the tool themselves (all that you need to do is input the info you know) and then they would go back to their doctors for tests and diagnosis. That way, doctors don't need to know about ALL rare diseases!!!!

Are you able to use logic?

 

[TruthSeeker]

I don't know where you live but River Wind is dead on the money for medical treatment in the U.S. Doctors freel pressured to GROSSLY over-test to avoid missing a test that might reveal the problem. And that, along with ballooning costs for malpractice insurance are THE primary reasons for our growing healthcare costs.

Well, here, the government pays for the tests (universal medicare). So the government pressures doctors to not test unless they absolutely have to. That way they can save money.

One big drawback to your idea is that self-diagnosis checklist. When people do something like that they will ALWAYS come up with symptioms they don't really don't have. For example, "do you have frequent headches?" Answer - yes. (While in fact thay may have had one only every two weeks on average and those were brought on by drinking or smoking.)

We already do that. I don't know about you, but when I have a health problem, I go to my doctor and TELL him how I feel. There's no way around this. I have no idea what the hell you do. Does your doctor ever ask questions? Like "do you have frequent headaches"? I don't see how this is any different.

Thais like that REQUIRE an interactive session with a live doctor in order to rule out spurious incorrect information.

And how is that done? Please, enlighten me.

 

[Read-Only]

Well, here, the government pays for the tests (universal medicare). So the government pressures doctors to not test unless they absolutely have to. That way they can save money.

I understand - and it also allows for many problems (such as yours, perhaps?) to go undiagnosed if the tests actually needed aren't performed.

We already do that. I don't know about you, but when I have a health problem, I go to my doctor and TELL him how I feel. There's no way around this. I have no idea what the hell you do. Does your doctor ever ask questions? Like "do you have frequent headaches"? I don't see how this is any different.


And how is that done? Please, enlighten me.

What part of "interactive session with a live doctor" do you not understand? It's precisely what you stated i the next to last paragraph above! Rather than just ticking boxes on a mindless checklist (your current suggested method), a LIVE doctor would make the effort to find out if you really DO have frequent headaches, for example, rather than just accepting an answer of "yes" from you. And depending on the answers you provide, he can go deeper into specific areas that seem to fit with your symptoms.

My point is that a checklist (like you propose) is highly suggestive to many people. As they go down the list they will begin to "discover" symptoms that they don't actually have. And that will greatly skew the possibility of reaching an accurate diagnosis. In fact, it would only cloud the issue.

 

[Hercules Rockefeller]

Are you able to use logic?

Oh my, the irony.